Family caregivers may be sacrificing their own health to help loved ones

(Reuters Health) - Many family caregivers in the U.S. provide unpaid medical aid and other services to loved ones at the expense of their own financial, physical and mental health, a study suggests.

Nationwide, an estimated 14.7 million family caregivers assist 7.7 million older adults who live in the community rather than in institutions like nursing homes. These family members often help with daily activities like eating, bathing and dressing. Many also provide medical support such as scheduling physician checkups, managing medications, cleaning wounds and giving injections.

“This issue is not a small or isolated issue but is widespread,” said Jennifer Wolff of Johns Hopkins Bloomberg School of Public Health in Baltimore, who led the study.

“There is no silver bullet easy solution to simplify the management of meeting complex care needs – this is an issue that is experienced by individuals but is the result of the fragmented and complex health care system and long-term care system that families often are left navigating without any formal preparation,” Wolff added by email.

To assess just how much unpaid care family members and others are providing to aging loved ones who live in the community, Wolff and colleagues analyzed data from two 2011 surveys with a combined 1,739 caregivers and 1,171 elderly adults.

Based on these surveys, researchers estimated that 6.5 million family and unpaid caregivers provide substantial assistance with medical needs, another 4.4 million offer some help and 3.8 million don’t handle health care.

Almost half of the caregivers surveyed – 46 percent – helped an elderly person with Alzheimer’s disease or dementia. Another 34 percent assisted a loved one with a severe disability, the authors reported in JAMA Internal Medicine.

Roughly half of family caregivers provide substantial help with medical needs and spend around 28 hours a week assisting loved ones, the researchers found.

Compared with people who didn’t offer medical support, caregivers who provided substantial assistance with health care were 79 percent more likely to experience emotional difficulty and more than twice as likely to experience physical problems themselves as well as financial difficulties.

They were also more than five times as likely to miss out on important activities in their own lives and more than three times as likely to suffer lost productivity at work.

For example, 20 percent of caregivers providing substantial medical help missed work at least once in the past month because of this assistance, compared with 7 percent of their peers who provided some support with health needs and just 3.5 percent who didn’t do this at all.

In their personal lives, 28 percent of caregivers who offered a lot of help with medical needs missed out on time visiting other family and friends, compared with 13 percent of their peers providing some help and 5 percent who didn’t offer any assistance with health issues.

One limitation of the study is that the survey data can’t prove that providing medical support to loved ones directly caused hardship for caregivers, the authors note. The measure of family caregivers’ involvement in health activities was also limited to coordination of care and management of medications, the researchers point out.

Even so, the findings add to a growing body of evidence on the physical, emotional and financial predicaments family caregivers often encounter because they devote so much of their time to assisting elderly loved ones, Carol Levine, of the United Hospital Fund of New York, notes in an accompanying editorial.

To minimize strain, caregivers should look for support that might be provided by others, such as medication management and care coordination, Levine said by email.

“Unlike personal care or emotional support, which requires hands-on care, these are tasks where other family members, close friends, or professionals like pharmacists or social workers can help,” Levine added. “If you get help with at least some of the hardest parts, the others can get your full attention.”